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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability.

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential.

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context.

Empowering programme

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says.

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains.

Feedback from parents

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do … she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before … as a mother of a Down syndrome baby – but for any mother … I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot … my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …”

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq.

News Archive

SRC and student parliament elections declared free and fair

2004-08-17

The Electoral Institute of Southern Africa (EISA) has certified the University of the Free State ’s (UFS) election process today ( Friday 13 August 2004 ) and declared it free and fair.

The process to elect a Student Representative Council (SRC) and Student Parliament started on 2 August 2004 and ended today with the announcement of the results.

“No objections regarding the voting process were received and the preliminary results were announced last night. A total of 2192 votes were cast, while 416 votes were spoilt,” said Mr Seth Phamuli, Chief Electoral Officer (CEO) of EISA.

Mr Alfred Geldenhuys, third year student in B Com Human Resource Management, was declared the SRC President for 2004/2005. Mr Geldenhuys was SRC representative for Campus Matters in 2003/2004.

The other members of the SRC are:

Vice-President: Annelise de Kock (fourth year student in B Sc Dietetics)

Secretary: Michelle du Plessis (third year student in B Sc)

Treasurer: Dida Coetzer (third year student in B Rek)

Academics: Cherese Laubscher (third year student in MB Ch B)

Ladies Internal Liaison: Tanya de Jager (third year student in B Ed Intermediary Phase)

Men’s Internal Liaison: Stef Conradie (third year student in BA Human Movement Science)

Transformation: Clayton van der Ross (second year student in B Com Human Resources Management)

Arts and Culture: AC Geldenhuys (second year student in B Acc)

Recreation and Internal

Affairs: Khotso Motloung (third year student in B Com Accounting)

Campus Services: Sylvanus Watson (fourth year student in B Sc Agric)

Constitutional and

Legal Affairs: Lerato Mofoti (fourth year student in LLB)

Dialogue and

Associations: Owen Kumalo (third year student in B Com Sport Management)

Kovscom: Estel Scheepers (third year student in BA Integrated Marketing)

Sport: Graeme Bradley (second year student in B Com Human Resources Management)

Student Development: Werner du Preez (third year student in B Com Economics)

Irawa: Jeanri-Tine van Zyl (second year student in BA Media Studies)

In the Student Parliament the African Christian Democratic Party (ACDP) and the Kovsie Alliance were each granted seven seats, whilst the Here XVII was granted 11 seats.

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